In order for her to proceed with the surgery, Tess needs to be given the green light from the rest of her "team" of specialists, which basically means they have to agree she can physically handle such a major (6-8hrs) surgery. Which means they all need to see her, which means many, many appointments in Boston.
This coming Wednesday she is scheduled to see pulmonology. This will be a new doc for us at Children's because her past pulmonologist was at Maine Medical Center so I am not sure what to expect for this appointment. I'm guessing chest x-rays are a real possibility.
After that appointment we are scheduled for cardiology which includes an EKG as well as a "tentative" echocardiogram because her heart rate has been noted to be a tad jumpy and irregular. She also has been known to suddenly just look terrible and break out in a cold sweat and be all cold and clammy as if she's had a sudden drop in blood pressure. In fact, for years her dad and I had mentioned to many different doctors that we thought she needed to see a cardiologist with all of them basically shrugging off our concerns by saying things like, "Kids like Tess tend to do their own thing. Their bodies just don't regulate themselves like ours do."
Really? I hadn't noticed.
Even after the nurses at Children's Hospital had mentioned it to the doctors because they had noticed the odd fluctuations when monitoring her during some of our stays as an inpatient and also thought it was a little abnormal. Even after her pediatrician finally agreed with me that maybe it was time to see a cardiologist down there and made the call himself to talk with her developmental pediatrician at Children's to express his concerns. Still it was ignored.
Well, I am here to tell you that I am willing to let things go for only so long and I can promise you, when my baby is facing such a huge surgery and I am not convinced her heart is up for it, I am not going to let it be shrugged off any longer.
So I made the call myself. And got blown off.
Oh, no you didn't! (insert finger snap and head weave here)
I decided it was time for that grumpy old beast "Mama Bear" to make herself known.
I called again and might have, somewhat angrily, told the developmental pediatrician's nurse something along the lines of, "Her father and I have requested an appointment with a cardiologist for years and we've gotten nowhere. Her pediatrician in Maine agreed with us that she should see a cardiologist and still Dr. M (her pediatrician at Children's) didn't feel it was necessary. Now Tess is getting ready to undergo a major operation and Dr. M still doesn't think it's of any concern?! Okay then, here's the deal. You tell her I said that I want a signed note from her stating that I repeatedly asked for a cardio appointment prior to surgery and that SHE denied my request and that she can personally guarantee that Tess's heart will withstand the surgery with no problems whatsoever!"
The appointment was made later that day along with the EKG and ECHO.
That Mama Bear can be a real b*$%#, can't she? An effective one though.
But I digress.
As I was saying, her appointments are on Wednesday, Thursday and Friday. I have "karate chopped my way to a better price" and booked us a room for two nights in Boston.
I had originally thought we might try to leave on the 7:00am ferry on Wednesday which would put us on the mainland around 8:15 and allow us just enough time to make the first appointment in Boston at 12:30. That is if the first boat runs. And Tess doesn't have a seizure on the way. And there is no traffic.
So yeah, Tuesday ended up being the day to leave based on all the above variables possibly coming into play on Wednesday. And now a storm. Are you freaking kidding me, Mother Nature???
My new, revised plan, is to leave tomorrow. Get as far as Biddeford and bunk in with our beloved nurse Sheila and Tessie's, excuse me, I meant, Sheila's, boyfriend for a couple of nights in order to get ahead of the bad weather and insure our safe and timely arrival in Boston on Wednesday. I guess I should call and let her know that, shouldn't I?
And that, my friends, is how three days of appointments turns into five days away from home.